CSF Leak Treatment continues…

I’ve been reading other bloggers lately with CSF leaks trying to gleam treatment ideas, and it occurred to me that I should give more details of my own treatment to share with others that are searching.

The situation:

I was in a car accident in late September 2013.That means I’ve been on bedrest for about 5 months. I have had 8 blood patches, a fibrin patch, and the lumbar drain procedure. The only change it has made is that the lumbar drain caused me to be in the ICU for 14 days instead of the 5 we planned for and I was much worse when I got out. Pre drain I was able to stand for up to 3 hours before the pain and nausea. After the surgery… I’ve been out of the hospital a little over 6 weeks and I still can’t stand for more than 3 minutes before the headaches and nausea start.  So there’s that.

The current treatment plan:

I have found a Bowen worker (click the link to go to her website) who is completely awesome and willing to make house calls. I get a treatment once a week. Click the link to learn more about what Bowen work is, but the short version taken from her site is: Bowenwork is a very gentle and dynamic soft tissue therapy technique. Originally know as Bowtech, Bowenwork is now practiced and taught around the world and has been proven to be effective for both acute and chronic health conditions.  It is performed by applying subtle, yet profound movements to the body, enabling the body to heal itself.

I find that the day after treatment I’m more sensitive and can’t get around much. But the second day I feel MUCH better and definitely feel like this adds small but steady improvement to my symptoms.

This week I also had my second visit with a Craniosacral Therapist.  If you suffer from a CSF leak you will be thrilled to know that one of the events featured on the craniosacral teaching website is a conference called: “Beyond the Dura”. Yup these are our folks. Anyone who knows or cares that much about dura and the flow of spinal fluid is someone we need to be working with. Surprisingly there is not a lot of information online about CSF leaks other than bloggers, and chatrooms filled with fellow sufferers comparing different treatment plans.   But Craniosacral is worth checking out. Here’s a blip from their site: CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system – comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.   Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the  functioning of the central nervous system.   By complementing the body’s natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction.

Nutrition: I’m making sure to keep my body well prepared nutritionally. I take two different Omega formulas each day. One fish based, one plant based. I take an Emergen-C to keep Vit C levels up and mix in a bit of Magnesium Calm. I’m also taking the Isagenix Daily Essentials with Product B, and the Isagenix Brain Boost. I really feel like they are both helping. I ran out for awhile and quit taking both and experienced a noticeable difference in clarity and memory.  I’m also taking Touchstone Super Greens + D as both greens and Vit D are so important to cellular healing.

The greatest news ever – I heard back from my acupuncturist with a Standard Process supplement that helps increase production of CSF. One of the things I’ve been concerned about is that my volume dropped so low during my last lumbar puncture (pressure of 4, down from 11) and when they inserted the drain, it didn’t drain any fluid (worth mentioning) over the 5 days the drain was in. So the concern is that not only do I have a leak, but I’m not making enough fluid. I just started the supplement and don’t have much to report. But they said it would be 2-3 days before I notice anything.  I’ll let you know how it goes.  I also found MethylCobalamin on another bloggers site. It’s a B12 supplement. The bottle says “It is more concentrated than other forms of B12 in the cerebrospinal fluid where it can be used by the central nervous system. It donates methyl groups to the myelin sheath that insulates certain nerve fibers”. Yea, I pretty much bought a bottle instantly. Will let you know how it goes.

Of course it goes without saying.. but I’ll say it anyway. I’m not a doctor. I’m just a person researching myself. I share for others out there suffering, but please do your own research and talk to your own doctor before making any changes to your treatment protocol.

So, I’m positive. Both therapists are wonderful and I feel changes. Sometimes good, sometimes bad. But change is good I think.

I’ve also been researching Dr. Linda Gray at Duke University as well as the Cedars Sinai program. I’m leaning towards Duke these days. Although I have a support system in L.A. so it feels easier to go there. But on the other hand, Duke has better imaging technology which means we may be able to fix me yet with a blood or fibrin patch rather than the “big scary open surgery”.

Much love to you if you’re in the same boat. CSF leaks are a crazy, unbelievable injury that is relatively unknown, life changing, and difficult to treat. We must all stick together.

Create your Sunshine Life. Even if it’s lying down. And if you’re not lying down. Please, get up and dance or something.



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